Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
There are many ideas floating round my head. But I can’t seem to put them to paper, or screen.
I have the thd urge to write but I can’t get the ideas formed. I hate this.
This post is definitely just a tick box for today.
That’s all I’ve got for now, I wish I had more.
Sometimes I think I’m so used to be tired that I don’t even notice that I’m tired anymore. I struggle to say I even have fatigue, it’s just me. Like the pain and discomfort, for me it’s my normal.
And then there are days like today where all I can feel is tired. Where the world feels a little bit slower and I’m fighting against the tiredness in me, as well as everything else.
Now I should say something clever or at least a little bit profound about living like this. But I honestly just don’t have the energy for that today.
I need to go back to sleep, but the joys of being me I don’t actually know if I’ll be able to sleep. I guess will have to wait and see.
You’re going on a cross-country trip. Airplane, train, bus, car, or bike?
The freedom people get when they are not disabled will probably never cease to amaze me. The freedom just to answer questions like this, to not be stopped by who they are when they try to do so.
Many of these modes of transport aren’t accessible to me, and those that require planning.
As a full time wheelchair user, an airplane is not accessible to me, it is simply too risky. If you don’t understand what I’m talking about, then you are lucky.
While a train is generally accessible to me, with assistance. There’s no guarantee that all the stations I may want to go to are accessible to me. In fact from experience, money aren’t, and this often determines exactly where I will travel.
While buses at least in my area are accessible to me, they are only accessible to me if there isn’t already someone in a wheelchair on the bus. One day, the people that designed for which transport might learn that multiple disabled people can and often do travel at the same time.
Certain cars are accessible to me, but not many. I cannot just get a lift off anyone. And while I can learn to drive a specifically adapted vehicle, to do get the vehicle would cost me money I don’t have. This is before I even know whether driving is something I would be physically capable of.
I’m going to just say that we bike is concerned, I cannot ride one and we’ll leave it at that.
You don’t travel to a place on a journey, you visit that place as well. Accessibility doesn’t stop in modes of transport.
The world isn’t generally accessible for people like me in various many ways. I don’t really get to explore questions like this, without an element of ignoring reality. There’s a word for this, which took me as surprising amount of time to remember at 3:30 am. Cognitive Dissonance.
I think somebody’s gonna read this and wonder why did I take it so seriously? It’s obviously one of those writing prompts like what would you do if you won the lottery? Reality isn’t really supposed to be considered in these situations.
But I’m not really good considering reality when someone asks me these questions. I’m not really good at the cognitive dissonance. I’m thinking about myself and situations I might be in. My disability is such an integral part of who I am and the experiences I have. That it’s hard to separate myself from it, even in the situations.
I suppose I don’t really know what it’s like to think as a non-disabled person. I don’t really understand what it means to have that freedom on any level, whether that be thought or reality, it doesn’t seem to matter.
Maybe if I had a bit more freedom, in reality, it might be something that would reach my imagination, a little bit easier. Then perhaps I could answer these questions as they were intended to be answered.
The only way I reach this level of freedom in thought, as I am sometimes able to reflect in my writing, is to completely distance myself from the thought. In reality, my freedom is always limited by the world around me and there is nothing I can do about it. As soon as I put myself in the situation, my reality hits again, and I am limited by it.
Please forgive the state of this post as my sleep deprived brain is unable to reread it and make sure it actually makes any sense at all.
What activities do you lose yourself in?
I could listen to music all day ever day. It’s a major form of escapism for me. The only one I can partake in when the fatigue hits.
While I can’t say I have a favourite song, I love music to much just to pick one song. I can say that my current go to song is linked below.
Music is amazing. But as much as I don’t like silence, if I want to focus on what I’m doing then I have to have tv on rather than music. If I have music on I will just get too lost in the lyrics to be focusing on what I’m supposed to be focusing on.
So if I’m ever ignoring you, when I’m listening to music, know that I’m not doing it on purpose. I’ve just got lost in a song or two.
What’s your current go to song?
Which animal would you compare yourself to and why?
As you may have notice with these writing prompts, I might not always answer them the way they’re intended to be answered. But maybe that’s the point of the prompts.
So in order to answer this question, how I want to, I have to answer it to different ways. Reflecting my life, I suppose. The way I would answer it on instinct. And the way, I answer it as a disabled person. This might seem odd given the type of question being asked, but I think it’s just hardwired into my understanding of the world. And given the fact I’m disabled I think that’s fair.
My instinct is to go with an elephant. They’re clever like to watch the world go by. They seem to revel in the joys of an easy life, and sometimes that’s all I want.
Taking my disability into consideration I think I would be a good dog. Dogs are calm and loyal and they understand the needs of the people around them, believe me a say this from experience of my own doggies. I think these are qualities that my disability has taught me.
I would like to be a dog most of all I think. The calm relaxed lifestyle, the love, to never get bored of your food. All of it just seems better than being a human.
I want to be alone a lot of the time, at least I think I do. But my disability means that the times when I’m alone are often the most debilitating for me.
Take now for example, as I write this post I’m lay in bed, and I find that one of my chargers isn’t working. I have other wires but they are not where I can reach them myself. And while I could wake the person I live with, and they wouldn’t mind, this is not something I deem important enough to wake them after 12 o’clock at night for.
In the past when I have had a problem, but not a serious enough problem, I have created bigger problems that I deem worthy of asking for help for. For example dropping my bed control, without which I am unable to move in the night, which causes so much pain that I am unable to sleep. But that isn’t something I will be doing tonight.
No matter how much I find myself wanting it, being alone reminds me what I am unable to do on my own, it reminds me just how disabled I am. Being alone for any long period of time is always going to inaccessible to me. And sometimes, like right now, it is difficult for me to accept that reality.
I wonder if I do you want to be alone or if I just want to be able to do things for myself? Or if what I really want, is others not to have to do the things for me. While all those things sound the same, I don’t think they are. Wanting to be able to do things for yourself and not wanting other people to do them for you or different. One is about independence the other is about being a burden to those around you.
But when you can never be alone for any meaningful length of time. When you always need the help of others to do the simplest things. You are always going to be a burden, or at the very least feel like you are a burden, in some way or another.
Maybe the reason I want to be alone is because I don’t want to feel like a burden to anyone. And when I’m alone I can’t ask for help, so I can’t bother anyone, so for a little while I’m not a burden.
Not being disabled will always be inaccessible to me. And that means the life of those who aren’t disabled, the life of true freedom and independence, will always be as well.
So why call this post nighttime?
Well, if it wasn’t obvious that tends to be when I am alone, the most thanks to my messed up sleeping pattern. I’ve heard it said before that nighttime is the worst for your emotions, as this is when they are free to control you. And honestly right now I would have to agree.
Nighttime is when I am alone. Nighttime is when I realise being alone is inaccessible to me. Nighttime is when I cannot sleep.
What is your middle name? Does it carry any special meaning/significance?
My middle names come from other family names. One comes from a grandparent and the othe d from one of my siblings who died before I was born, so yes that they do have a special meaning.
The same applies to my first name. My name is Kathleen, but I went by Katy for years, to the point where I didn’t know this was my birth name until later in life.
But the way Katy is spelt is also significant. Being born with Cerebral Pasly, meant that didn’t know if I would be able to read or write until I reached that age. The joys of the unpredictability of brain damage for you.
This makes the fact that I enjoy writing even more ironic, and I hope shows you can’t judge a book by its cover.
You’re writing your autobiography. What’s your opening sentence?
A story that doesn’t quite fit together.
As a sentence on its own own, this makes no sense. Which I suppose could be said to defeat this purpose of this writing prompt. But to me, this just seems perfect.
It seems like the perfect way to describe a life that has felt like it never ended up with anything. My mind always seems and a different page page to my body, and I really don’t know where my heart is half to time. But it seems to be the prevailing theme of my life, that these areas, nor any areas will ever line up.
Did you ever play that game where you would draw the top half of something, a person maybe, or write the first sentence of a story. Then you would fold over the page and hand it to the next person to draw or write the next part. And so on until you had a completed, drawing or a completed story. Then you would read the story out loud, or look at the drawing, and laugh.
You would always laugh at them nonsense that would be produced. When the person before I had no idea what had been written drawn. When the next step seemed to be off kilter with the previous.
My entire life, kind of feels like that.
I can’t say I have a bad life. There are some really great parts. But I always get a sense that I’m living a life that was never supposed to be mine.
I don’t mean that in the sense that I believe someone else should have had to deal with my difficulties. I’m frequently glad that while those around me have their own struggles, they aren’t the ones I have.
I mean it in the sense that it feels like I mind or a soul like mine wasn’t built for the life I have no choice but to lead.
Does that make sense?
Does it sound selfish? Is it selfish? I honestly don’t know.
But that’s where I got the opening sentence for my autobiography from. Or more accurately, I suppose the opening idea.
Interestingly, even my sexuality found itself fitting into this area. Despite that being a lot more difficult to figure out in many ways. And yet it sometimes feels like the only part of my life that makes any kind of sense, and as in any way within my control. But I have to be very careful with exploring that as I can easily get sidetracked.
While I know that my life will never slot into the life I feel I should have had. I can only hope that one day it at least slots together, and begins to feel like one life. That I begin to feel like one person, rather than several parts of a person that will never quite meet.
If you actually read my blog regularly, which I thank you very much for by the way. Then you’ll notice I try to post something daily, occasionally though I will admit that I have backdated a post or two. But you may also have noticed that some of posts have more substance than others.
This is because I have more motivation to write on some days than others. But I force myself to write something, anything, almost daily. And yes writing this post about writing posts is me trying to write something with zero motivation or idea what to write about.
I do this because despite how difficult I find it write some says writing is freedom to me. Writing sometimes feels like the only outlet I have in life, the only level playing field that I have.
I love to write. I feel sometimes that I need to write, and yet sometimes that I can’t write. So writing something daily, is better than writing nothing. There was a time when I wrote nothing, and it was a very emotionally dark time in my life. At least it’s putting words to paper, or screen to be more accurate.
From what I’ve read in the writers groups I’m in, I suppose you could say I have a major case of writers block. I want to write so badly, I have all the ideas. But I often lack the motivation to work on my ideas, or worse the physical and/or emotional energy.
When I do have the motivation but I lack the energy, I feel like my body has yet again betrayed me, in the only thing I feel I’m supposed to be good at.
I’m disabled after all.
But every word, every sentence, every post is me trying. Trying not to let the doubts or my body win. Trying to do something that I enjoy, even when I’m not enjoying it.
From experience a know that my disability means that my physical energy doesnt always match up with my motivation and mental energy to do something. I often find that when I have the motivation or the desire to do something, that my body seems to disagree with the fact that I want to do it, and I don’t have the energy to even try. There are many things that I want to do with my life that lay on the back burner because of this.
I just wish for once in my life that things would line up for me. That my body and my brain would agree on when I can do something, that way maybe I would be able to be a little bit more productive, and actually get the things done that I am try to do.
Maybe then achieving things will be something I feel like, I’ll be able to do.
My Inaccessible Life 